Help Stop The Pain for Lianna
Donation protected
Lianna is my awesome 17-year-old daughter living with cerebral palsy. She is wicked smart but trapped in a body that doesn't cooperate AND causes her pain. Her brain damage affects her motor movement, not her cognitive abilities.
About 4 years ago, for an unknown reason, Lianna started biting her lower lip. (This is NOT behavioral!) She has almost bitten her lower lip off. She is in constant pain because she cannot make her body stop this movement. We have met with teams of specialists and tried many drugs, sadly to no avail.
I (her mom, Utawna) made a video that is on YouTube that explains Lianna's problem and what I've done to try to stop it. Either search "Help Stop the Pain for Lianna" or click HERE .
I have been searching endlessly for a way to prevent Lianna from hurting herself. She currently wears a custom guard made by an awesome special effects makeup artist that stops most of the biting, but sadly not all.
Engineering students from Miami University of Ohio made Lianna's problem their Senior Project and a possible solution was created - HOWEVER, Miami University is not a medical college. To bring this lip bumper concept to fruition, the design must be made from medically approved materials and attached with existing methods (such as orthodontic brackets) or it would take years to get approved.
I have called many orthodontic supply companies, orthodontist offices, prosthodontists, biomedical elastomer companies, specialty dental printing companies, 3D printers, Dentistry colleges, and anyone else that will answer the phone. Because I am "just a Mom" most of these companies won't even talk with me. I must be able to pay someone to assist in this research process.
Lianna has medical insurance that covers regular dental procedures and the anesthesia required for all her dental work. However, insurance companies will NOT pay for experimental procedures.
Any funds raised will go strictly for materials for the lip guard to be made (such as the 3D printing or polymer purchase) or the time of the dental professional creating the design.
If anyone has any other ideas or people or companies I could contact, PLEASE let me know. Lianna has told me she would rather go thru spinal fusion surgery again than to bite her lip every day. (That surgery placed 2 rods down the entire length of her spine and screws into her hips. )
It is also our goal to help others. We know of many families with loved ones who deal with this horrible pain and even some that have bitten their lower lips off.
My daughter Lianna is my world. I miss my happy girl and want her pain to end. Thank you for your time and consideration.
Lianna and Utawna
PS: I can and will provide any documentation needed to verify the research done so far and the contacts I've made. I just didn't feel it was appropriate to list names here without their permission.
About 4 years ago, for an unknown reason, Lianna started biting her lower lip. (This is NOT behavioral!) She has almost bitten her lower lip off. She is in constant pain because she cannot make her body stop this movement. We have met with teams of specialists and tried many drugs, sadly to no avail.
I (her mom, Utawna) made a video that is on YouTube that explains Lianna's problem and what I've done to try to stop it. Either search "Help Stop the Pain for Lianna" or click HERE .
I have been searching endlessly for a way to prevent Lianna from hurting herself. She currently wears a custom guard made by an awesome special effects makeup artist that stops most of the biting, but sadly not all.
Engineering students from Miami University of Ohio made Lianna's problem their Senior Project and a possible solution was created - HOWEVER, Miami University is not a medical college. To bring this lip bumper concept to fruition, the design must be made from medically approved materials and attached with existing methods (such as orthodontic brackets) or it would take years to get approved.
I have called many orthodontic supply companies, orthodontist offices, prosthodontists, biomedical elastomer companies, specialty dental printing companies, 3D printers, Dentistry colleges, and anyone else that will answer the phone. Because I am "just a Mom" most of these companies won't even talk with me. I must be able to pay someone to assist in this research process.
Lianna has medical insurance that covers regular dental procedures and the anesthesia required for all her dental work. However, insurance companies will NOT pay for experimental procedures.
Any funds raised will go strictly for materials for the lip guard to be made (such as the 3D printing or polymer purchase) or the time of the dental professional creating the design.
If anyone has any other ideas or people or companies I could contact, PLEASE let me know. Lianna has told me she would rather go thru spinal fusion surgery again than to bite her lip every day. (That surgery placed 2 rods down the entire length of her spine and screws into her hips. )
It is also our goal to help others. We know of many families with loved ones who deal with this horrible pain and even some that have bitten their lower lips off.
My daughter Lianna is my world. I miss my happy girl and want her pain to end. Thank you for your time and consideration.
Lianna and Utawna
PS: I can and will provide any documentation needed to verify the research done so far and the contacts I've made. I just didn't feel it was appropriate to list names here without their permission.
Organiser
Utawna Leap
Organiser
Middletown, OH